When someone is diagnosed with something like cancer that hits out of the blue or has a stroke or a heart attack...people rally. People organize fundraisers, bring meals, send cards, visit etc.
When you have an illness that you were born with and that will never go away people tend to forget about you. People think oh its just her , she's sick again. Or wasn't she just sick?. I'm sick more than I am well so to people its normal for me to be sick.
That doesn't make it easy. You start to feel forgotten. No cards, no emails, no visits, noone asking how you are. Because being sick has become who you are in the minds of some people.
I can count on one hand the number of visitors I had last time I was in the hospital. I can count on one hand the number or cards or phone calls I have gotten in the last year.
I think also when you have a disease thats known as fatal....it scares people off. Yes we are all going to die but you've been labeled as having a fatal or terminal illness...it scares people. They don't want to befriend someone who is in all likelyhood going to die from their illness. All it takes with CF is one bad infection...one nasty bug like cepacia, one episode of pneumonia that doesn't respond. It starts affecting other organs like the heart and liver. And it scares people. We as a society run from death.
I am very fortunate to have a wonderful family and some great close friends. I can't tell you how much my family means to me in the fight against CF.
But I know some people with CF that don't have that support system...they are truly fighting all alone.
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